PUBLISHED: 5:00 PM on Wednesday, May 4, 2005
Parenting a child with FASD: From hope to despair and back again

When Larry and Laura Rorem adopted a child with FASD, they had never heard the term. Laura had worked as a special education teacher for children with multiple disabilities and was familiar with some of the challenges accompanying working with disabled children. But the experience of raising not one, but two children with FASD still found them unprepared and often frustrated.

The Rorems' experience is far from uncommon. The CDC's National Center on Birth Defects and Developmental Disabilities estimates in a publication from last year that the prevalence of children with FAS (or a related disorder) in the foster care system is ten times that of the general population.

While agencies dealing with foster care and adoptions might have access to information about a child's prenatal history, staff members sometimes don't know, don't understand the impact of, or don't communicate the child's FAS/FASD status to other agencies, the CDC found. Today, foster parents in Alaska are offered education about the effects and developmental needs of children with FASD, and what can be expected of them, and teachers are required to take FASD training.

But back when the parents we spoke with had small children, FASD had not yet been discovered to be the wide-ranging spectrum of disorders it is now known to be. FAS, Fetal Alcohol Syndrome, was named only in 1973.

The Rorems' children had one thing that researchers have determined is important for potentially reducing the long-term negative outcomes for children with FAS and FASD: a stable and nurturing home environment. An important factor they did not have was early diagnosis -Ethe CDC report states that a diagnosis before the age of 6 helps reduce problems later on. Because of that, they were also lacking teachers and parents educated in the particular spectrum of problems that could be anticipated, and tools for handling them.

"Our kids were pioneers," Laura Rorem said. They were suffering from FASD before there were diagnostic clinics, and only diagnosed later in life.

Annie [not her real name] had never heard of FASD when she happened to catch the investigative ABC-TV magazine 20/20's 1992 installment "What's Wrong With My Child," depicting author Michael Dorris' struggles to figure out what was going on with his adopted son, suffering from FASD.

"I sat there thinking 'this is my child they're talking about.' Bingo. Everything fit."

Without having access to professional teams trained to diagnose FASD, children are often diagnosed with what really constitutes secondary characteristics - different forms of mental illness or learning disabilities. One of the Rorems' children was diagnosed with Pervasive Developmental Disorder and Asperger's syndrome, both disorders within the autism spectrum, and disorders commonly identified in children with FASD. Often, Attention Deficit Hyperactivity Disorder is the first diagnosis a child with FASD gets.

"We were thinking, 'we are good parents - why are we getting all these calls from the principal?'," Laura said, talking about her son's Kindergarten year.

Annie said her son's problems in school were exacerbated because he was drawn to the worst behaved kids in the class.

"That was our son, too," Larry said. "We said to him, 'I want you to tell me the truth before the teachers call.'." Often, when they compared stories from different sources, the same pattern emerged: The boy would get his buttons pushed in subtle ways, strike out in not so subtle ways, and end up being the one getting in trouble.

The Rorems tried behavior modification, by rewarding their son for showing a particular wanted behavior. When one behavior was mastered, they would move on to the next one.

"He did understand that," Laura said. The behavior would change -Ebut only temporarily. Behavior modification did not work. "And it often doesn't with these children," she said.

The umbrella term FASD encompasses over 250 different specific diagnoses, with different levels of severity and expressed differently in each unique person. Researchers, doctors, and social workers have a general idea about what to usually expect, and what roads are worth exploring. But for parents, not only is the road map of FASD education something that has to be adapted to their individual child - the surrounding terrain they have to navigate is often exhausting.

Working closely with schools to find workable solutions, educating the educators, creating Individualized Education Plans, and helping create a learning environment that works, constitute time-consuming tasks for these parents. And while knowledge about FASD is increasing, behavior stemming from brain damage is still often misinterpreted as behavior problems that would go away with the "right" kind of parenting or a disability that needs to be medicated.Some of the stress parents experience can be reduced by finding out they can realistically expect from their child, both in behavior and in academic achievement. But not all stress goes away with increased knowledge. When your 17-year-old requires the same amount of supervision as a preschooler to stay safe or makes decisions that a 10-year-old without brain damage wouldn't; when your 20-year-old has gotten "help" to get a credit card and maxed it out; any time a parent gets sucked back from hope to despair - that's a stress that no knowledge in the world can relieve.

Many FASD-parents struggle with stress-related health problems like auto-immune disorders and depression, and they also often lead a lonely existence. It's not uncommon for friends and sometimes even family members to withdraw, unable or unwilling to share the burden or be exposed to the often erratic and sometimes risky behavior of a child with FASD.

The parents we talked to, who all have young adult or adult children, were a bit reluctant to tell their tales, because, they said, they don't want parents of younger FASD-suffering children to despair. There is hope, was their message. There are success stories. And regardless of what stories other people tell - what can you do other than go on, and out of your way, to help your child find a place in life where they can function?

The Rorems children are, by chronological age, adults today. And still, Laura described her role as a parent as "caregiver."

"We become the external brains of our children; their external consciences. It is as if our children had cerebral palsy and were in wheelchairsE- we are the wheelchairs."

Because of the specific brain injuries inflicted by prenatal alcohol exposure, adolescents and adults with FASD have a hard time understanding abstract concepts like morality, cause and effect, sexual boundaries, money, time, and debt. That makes them prone to ending up in trouble with the law, and often in jail.

They do well in jail, said Larry Rorem, "because there's a structure: their time is scheduled, they're told what to do, and when to do it."

But a lot of the time, they have no idea why they're there.

"They just don't get it," said Larry Rorem. "And then society just doesn't get it about them."

"In prison, just as in school, they'll gravitate toward the worst behaved ones," said Larry Rorem."It's like the playground behavior from elementary school magnified."

For parents of FASD sufferers, there's never a time when they can relax, lean back, and say they've successfully raised their child to adulthood. Every time the phone rings, they wonder "is my child in trouble again?"

Laura recalled times when she's been in court talking to judges about how the brain damage affects her children's ability to make moral judgments twice in one day. Helping people understand that FASD sufferers want, but can't determine how to be responsible and do right is often a frustrating task. A young adult who may have the verbal skills of a public speaker and the looks of a model may still be at the emotional level of a preschooler or preteen, which makes it hard for people without knowledge of FASD to believe that a parent advocating for his or her child isn't making things up to keep them out of jail.

Carrots - as in behavior modification - doesn't work. Punishment - as in incarceration - doesn't either. Why? Because the parts of the brain that process cause and effect, action and consequences, are often severely affected in FASD. So what does work?

"A positive structure. Wraparound services with people who understand FAS," said Laura.

Sandra [not her real name] has high hopes for her teenager who was recently given the opportunity to be mentored (bringing along a job-coach) by a business owner who didn't see a "problem kid," but one who showed passion and aptitude for the specific hands-on work his business specializes in.

And Sandra's child is far from the only success story. Children with FAS who have had the blessing of a mentor or another person who can function as their "external brain," or who, through services or sheer luck, have found people and an environment that sees to their strengths and are willing to help them build on those have the prospect of leading productive rather than destructive lives. But, said Theresa Williams of Parents, Inc., one of many Juneau organizations that works with FASD families, we've got a long way to go.

"The presence of the Diagnostic Clinic has opened up a dialogue for the first time," said Williams. "You can talk about it, and that means people have an opportunity to get answers. They know they're not crazy; that your child is OK, that she's normal for what SHE is. It makes it easier for parents and family members." There is less of a stigma, Williams said -Ebut there is still one.

And Annie agrees. "The fact that this neurological brain damage stems from alcohol consumption seems to reflect negatively on the people who have this syndrome, along with the families caring for them," she said. "I can't wait for the day when the cause isn't as much the issue, as the damage itself."

The first article in this three-week series is available here on Next week: The Juneau FASD Diagnostic Clinic.